Disability as Diversity: Reducing Researcher Roadblocks (Einstein-Montefiore CTSA UM1 Element E Research Project)

2024

D2/R3 is a mixed-methods, PWDD-engaged study of researcher-level perceived barriers and capacity to conduct disability-inclusive research. It will develop and test an intervention, informed by Prosci's ADKAR® model of change management. We are partnering with nine other US sites with: CTSAs and Intellectual and Developmental Disabilities Research Centers (IDDRCs) for basic/clinical research and University Centers of Excellence in Developmental Disabilities (UCEDDs) for community integration to address the following aims: Presentation 2 Aim 1. Measure investigator and research team knowledge, attitudes, biases and perceptions regarding DD and inclusion of PWDDs in their research. Aim 2. Co-design training on researcher-level factors that contribute to PWDDs' under-representation in research based on findings from Aim 1. Aim 3. Conduct randomized controlled trial (RCT) of the e-learning module. The study's over-arching goal is to promote equity in who benefits from NIH research. With its focus on adult PWDDs, D2/R3 seeks to: Close the gap in health outcomes research on adult PWDDS, especially as growing numbers of children with autism and other DDs transition to adulthood, Produce findings that generalize to all PWDs, given that DDs are a constellation of heterogenous life-span conditions, and; Ultimately, reduce the health disparities experienced by the DD population.

Performing Research or Evaluation

Health-Related Activities

Professionals and Para-Professionals, Adults with Disabilities

None

National

Federal

N/A